Many of our children and adults when developing seizure disorders unresponsive to anti-epileptic drugs will be classified into a syndrome. A syndrome is “a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms.” These syndromes are not based on blood tests, but rather symptoms. This is often the contributing reason why parents will explain to me that their child was assigned a syndrome and then it changed: Dravet at one time, now Doose, or Lennox Gastaut or other.
If we look beyond the syndrome and the symptoms of seizures we can potentially get to the root cause. An often under-tested and yet powerful root cause of seizures, is cerebral folate deficiency. Cerebral folate deficiency (CFD) syndrome is a neurodevelopmental disorder typically caused by folate receptor autoantibodies (FRAs) that interfere with folate transport across the blood–brain barrier. Seizures are a common symptom associated with CFD. When identified and supported nutritionally, often times, seizures can end.
The onset of symptoms associated with CFD can appear as young as the first few days of life and typically begin at 4 to 6 months. Behavioral changes may include poor sleepers, irritability, growth, retardation, spastic limbs, low tone, balance issues, seizures, mental regression. One third of the kids with CFD will develop seizures. Most symptoms appear to fully develop at age of 2 and yet many children go undetected. I often hear of parents reporting to me that their infants and toddlers who display these above symptoms, have been diagnosed with Dravet Syndrome. I often question has cerebral folate deficiency been explored?
The most reliable blood test for CFD is reported to be the FRa1 (folate receptor antibodies). The equally most historically reliable test is low folate levels in the cerebral spinal fluid. The latter however can be truly invasive as a lumbar puncture. In addition, research is now demonstrating that inadequate levels in the cerebral spinal fluid may not be a reliable indicator that CFD does exist.
In the medical journal titled “Folinic Acid-Responsive Neonatal Seizures” three cases were studies of children that did not respond to multiple anti epileptic drugs but stopped having seizures when administered folinic acid. In 2 of the 3 children, they showed normal levels in metabolic testing and in cerebrospinal fluid but did respond favorably to folinic acid. Please note that folinic acid, is the nutritive course administered and must be monitored by a medical doctor.
The incidence of elevated levels of folate receptor antibodies (FRA) is more frequent then medical practitioners may think. In this study, serum FRA concentrations were measured in 93 children with ASD (autism spectrum disorder) and a high prevalence (75.3%) of FRAs was found. I’m finding in my practice as well, that exploring cerebral folate deficiency is often overlooked, when idiopathic seizure disorders or “syndromes” are present. (Journal: Cerebral folate receptor autoantibodies in autism spectrum disorder).
There is much information to share with regards to Cerebral Folate Deficiency, which is why this month’s webinar will be specifically on cerebral folate deficiency. Please do register here for this month’s webinar. Regardless of the age of your child, if you are an adult, or you’ve been identified as having a genetic variance and/or been assigned a syndrome, this information will be highly informative.
Please join me in a FREE Webinar on March 15th, 2017 at 3:00PST. Please register to attend.
Much light,
Lynn
